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  1. Mithriel

    Eating improves exertion induced fatigue and symptoms of orthostatic intolerance

    Type 2. I've always eaten a fairly healthy diet with not a lot of sugar, though I am overweight like many of us. I suspect that my pancreas is worn out with the strain of the continual hypoglycaemic due to the ME but who understands ME enough ... Diabetes care is well organized by the health...
  2. Mithriel

    Eating improves exertion induced fatigue and symptoms of orthostatic intolerance

    Without going into much detail, I had attacks like this for decades. Doctors were very scathing and saw it all as psychological. Now that I am diabetic I have a machine and know that I did have hypoglycemia all those years. The brain needs glucose to function and I now believe that it is an...
  3. Mithriel

    Complex Regional Pain Syndrome (CRPS), what to do?

    After damaging his shoulder in a fall down the stairs a relative has all the signs of CRPS. every now and then with no apparent reason his shoulder hurts, his hand swells up (a lot!) and turns blue. If anything looks physical that does. The paper by Stone was just rubbish. It made no sense My...
  4. Mithriel

    Interleukin-1-related activity and hypocretin-1 in cerebrospinal fluid contribute to fatigue in primary Sjögren’s syndrome, 2019, Omdal et al

    And the underlying irony of it all is that fatigue was not a required symptom for ME. I never experienced fatigue and only have a little now after 50 years. I feel fine until I suddenly stop - fatiguability. One day I began to experience fatigue but it turned out to be diabetes. It was different...
  5. Mithriel

    Inhibition of Upf2-Dependent Nonsense-Mediated Decay Leads to Behavioral and Neurophysiological Abnormalities by Activating the Immune Response

    I have family members with autism who are doing quite well to very well but also ones who have a miserable constrained life. A treatment that helps even a little could make a massive difference just like one for ME.
  6. Mithriel

    A logistic regression analysis of risk factors in ME/CFS pathogenesis. Lacerda et al. 2019

    This may be a step forward from a similar study done years ago using GP records. They found that people with ME had more GP visits in the previous year with the commonest reason to see the doctor being "illegible" :)
  7. Mithriel

    The Assertive Brain: Anterior Cingulate Phosphocreatine plus Creatine Levels Correlate With Self-Directedness in Healthy Adolescents, 2019, Squarcina

    Personality traits are such a dubious, subjective subject this may be the start of something that will become a firm science one day .... or maybe not :wtf:
  8. Mithriel

    Virtual Reality-Delivered Mirror Visual Feedback and Exposure Therapy for FND..., 2019, Bullock et al

    A friend's grandfather lost a leg in the. He had a mirror he used when he felt phantom pain that uncramped his lost leg. The family too it for granted :)
  9. Mithriel

    Modification of both functional neurological symptoms and neuroimaging patterns with a good anatomoclinical concordance: a case report, 2019, Galli et

    It is so weird that they call it an emotionally based illness because there are no physical signs but then demonstrate physical signs to confirm they are right o_O
  10. Mithriel

    Interleukin-1-related activity and hypocretin-1 in cerebrospinal fluid contribute to fatigue in primary Sjögren’s syndrome, 2019, Omdal et al

    It sounds like he believes ME is just fatigue. That is what happens when all the other symptoms of ME are ignored by the "experts" and their research. It is like saying MS is just fatigue by ignoring the paralysis. :banghead:
  11. Mithriel

    The use of the labels ME, CFS, ME/CFS

    Sadly, in the UK especially under the FND work but elsewhere as well CFS and fibromyalgia are being used more and more as simply symptoms. if you have fatigue you have CFS, if you have pain you have fibro. Maddening.
  12. Mithriel

    Video: Upright Activity and Exercise Intolerance: Critical Concepts in the Evaluation of Chronic Fatigue, Dr Lucinda Bateman, 2019

    I think you can safely say you have an abnormal response to exercise. Before I knew very much about ME I was still active up to a point, mildly affect probably. I found it much easier to walk for 20 minutes than to stand and wait for a bus, particularly if I had children with me. From the...
  13. Mithriel

    Differentiating post-polio syndrome from myalgic encephalomyelitis and chronic fatigue syndrome, 2019, Jason et al

    I seem to remember the theory of post polio syndrome is that the polio virus damages the end plates of the muscles and as they are used they accumulate damage until after about 30 years people have reached the point where they no longer work properly so it is not a continuing infection. The...
  14. Mithriel

    Video: Upright Activity and Exercise Intolerance: Critical Concepts in the Evaluation of Chronic Fatigue, Dr Lucinda Bateman, 2019

    That seems like a very good way to categorize what we can do. Dr David Bell from the Lyndonville epidemic said that his patients could do lots of things as long as they were lying down. There is a particular feeling I get which may be the only reward with this disease. At times I lie down flat...
  15. Mithriel

    The use of the labels ME, CFS, ME/CFS

    That is not a paraphrase, that is the complete opposite of what I am saying so I want to make that very clear. (My GP only has one code for ME and so I am down as having CFS which label does not describe my disease or anyone elses's) I am literally bewildered by why I am doing anyone a...
  16. Mithriel

    The use of the labels ME, CFS, ME/CFS

    CFS is a wastebasket diagnosis. There are no wastebasket patients. Before CFS became a big thing in the UK people were told they had depression, then it was CFS, now you are as likely to be told you have FND and the situation is worse for children. Sorting out what patients really have is...
  17. Mithriel

    Mindfulness-based therapy for psychogenic nonepileptic seizures, 2019, Baslet, Ehlert, Oser and Dworetzky

    We get used to things, don't we :) I think it is very likely you are right about the brain not being able to process information. Like you, I have formed my own ideas of what is happening with the strange symptoms that are so hard to talk about and no one medical seems to know about. The idea...
  18. Mithriel

    Mindfulness-based therapy for psychogenic nonepileptic seizures, 2019, Baslet, Ehlert, Oser and Dworetzky

    Blindsight is where someone goes blind in one eye after a stroke. If they are shown a picture of a lorry in the blind eye they do not see it but when asked to name a vehicle they will say lorry. I think what you are experiencing are some of the strange visual problems which come with ME. I was...
  19. Mithriel

    The use of the labels ME, CFS, ME/CFS

    The paper, which was a PhD dissertation, was discussed in Time magazine a short time after it was published. That could not have happened without some high level input. There had not been time for word of mouth to have spread it, it suited someone's interests. I think we can't really understand...
  20. Mithriel

    Mindfulness-based therapy for psychogenic nonepileptic seizures, 2019, Baslet, Ehlert, Oser and Dworetzky

    Oh, that one is easy. The example I read was justifying a diagnosis of epilepsy and psychogenic epilepsy (called pseudoepilepsy in the article) If you have a seizure while cooking and burn yourself you have epilepsy but if you have a seizure but manage to move from the cooker and not get a...
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